Tuesday, May 22, 2007

Back to our "normal"

We are getting back to our normal schedule this week. Today we are starting with our Ms. Karen OT visit and then in the afternoon Ms. Carol PT visit. I am hoping to get back into Speech this week also, just need to make a phone call to Ms. Anna.

I will say on the Conductive Learning, that it was a very good program, the school is wonderful, and the people there are great. But you have to be prepared (more than I was and I thought I was soooooo ready) both mentally and physically. NOT just the child, but also as the parent. IT is hard on the child to get use to the different people working with him, the different routines, the structure, the hard work. It is very tiring. Daniel fell asleep EVERY day within 90 seconds of being in the car. I am serious when I say that. And the parent/toddler group only goes for 3 hours, not the 7 hours that the older kids go. Daniel did fairly well, he learned some things, I learned some things and we will continue to practice MOST of the things we learned. Daniel made a fair amount of progress in the time we were there, and I will say some things work for some people and some things don't. I won't say that Conductive Learning didn't work for us, it did, but emotionally the whole experience was very,very hard on me (the mother)and Daniel (he hardly jibber jabbered at all). I don't know how to explain it, its hard being away from your family, yes that is probably part of it, but the whole thing just wiped me out emotionally. I still have not recovered, ask Lonnie, I am crying every 5 minutes. Life, the crap that Daniel is dealt, the struggle he has ahead of him, the things he will miss out on that most take for granted. I am grieving, not for me, but for the things Daniel will have to endure......I am grieving, for the life and childhood that Daniel is missing. I feel such sorrow that Daniel will have to struggle thought things, and it tears me apart. I HATE that Daniel can't have the life that a normal 2 year old has, the running around, the playing, the getting into things. I HATE that Daniel's life is filled with therapies, doctor appointments, stretching, medicines and equipment. I don't even really know where to start or how to explain it. It is hard, no matter how great the program is, it is hard going by yourself, away from everyone you know, it is hard to see your child struggle and cry, you are there trying to help him, but he doesn't understand that and it seriously rips your heart out. I told myself over and over again, this is helping him, and it was and it will continue to help him, but it will be me helping him in an enviroment that he is use to. We will build him the plinths and the chair, and we will follow the thought process of Conductive Learning, but it will have to be on the comfort level that Daniel and I are able to handle. I don't know if that makes sense to anyone who reads this, but you know when your child is shutting down and not working with the program, your gut tells you when its just not accomplishing anything. And when Daniel got on the plinths, he shut down, it scared him for whatever reason, but in his little mind, when he had to lay on his back on those plinths, he was terrified, and I couldn't watch that. So we will practice here at home, we will get him use to them, and gradually, he will become comfortable with them and they won't be the scary table that he didn't like. :)
I know there are some of you who read this and say "oh my god, let the kid cry a little". And I will tell you that I did, and I did again, and I will let him cry again on other things in his life. But for right now, for today, for this week.......he is my baby boy, and he will have many many more battles and scary things in his life that most of us will never have to deal with, that he will have to deal with, and for right now.........I am going to pick him up, give him a hug, and sooth him, and tell him not to worry I'm here and NOTHING is going to happen to him. I am his protector, and I want him to know that I will protect him forever from whatever I can.......from whatever horrible, scary thing. So do I baby him? Damn straight I do...he's got a tough battle for his life, and I'm going to fight what I can....and I won over the plinths. (this time!)


Anonymous said...

Wow- I totally hear you. I had a 25 weeker and did intense therapy (7x a week at one point) for over a year. It is emotionally grueling to see your kid get pushed to shut-down limits. There were moments of total guilt/grief for me and sometimes I doubted the things I was doing and/or cried.

That being said, I have no idea if it was the continued therapy or aging, but one day the things that terrified her/shut her down stopped being scary and she blossomed. Then therapy blossomed and she took off. She now does stuff I would have never dreamed about. Never. When you are ready, do follow the program- EI works. He will cross a bridge too.

Mom & Dad (Melanie & Lonnie) said...

Thank you for your comment- It is nice to know someone understands the feelings that I have.

I am hoping that Daniel gets to that point Of "crossing over". Its funny because depending on WHO he is working with, he will do wonderfully. If you scare him or he freaks out about something, give it up...you're not going to get anything from him that day.

Thank you again for posting. I really appreciate it.

Billie said...

Good for you for following your heart, even when it is hard. I think you know Daniel best, and you know what works for him, and for your family.

Hang in there.